Thursday, May 31, 2012

Crystal Chin, 23, came to Canada from Taiwan at age 10 and can’t remember a time when therapy wasn’t a constant in her childhood. Crystal has profound insights about growing up with a disability in a culture that values normalcy.

Crystal on therapy: My experience was extreme. I was doing therapy every single moment. My mom would drive me to physiotherapy every day, five days a week. Then my dad would come home and do an extra hour of physio with me at night, after work. My mom was a stay-at-home mom and she would do stretching with me and focus on doing up buttons and zippers. My parents wanted to integrate every single bit of therapy into everyday life. For example, they'd help me all the time with how I was sitting and correct me if I was holding my spoon wrong. I had no idea swimming was considered a leisure activity. For me it was aquatic therapy.

As a kid, you’re constantly finding out what’s wrong with you and I think even a typically-developing child would get some sort of inferiority complex from that! I’m just not good enough. I can’t even hold a spoon. I can’t even hold my pencil. There has to be more to a child’s identity than going to physio every day.

I think for kids who are ambulatory, or close to being, therapy is tantalizing for parents. No one can say when their child is going to reach his final level of function. There’s a sense of “If we can just do x, y, z. You’re so close.” But for the child it may only improve function to a slight degree. “This is my final product. Can you just leave me alone?”

Crystal’s advice to parents: Have a more balanced life, be your child’s parents, not their therapists, and go out and have fun. There need to be times for therapy, but there should also be times when I’m allowed to be a kid and we can be just a typical family. Remember that you can't get time back. Sometimes my parents look back now and I think they realize what a different childhood I had from my younger sister. Remember -- you can't give a child back their seventh year.

Try really hard not to compare your child to other children. I always found it interesting that when I was young my parents would say “You’re great!” But then I spent all my time being taken to different doctors who were supposed to fix me.

It didn’t really occur to me that I needed to be fixed until I started school. I got to see how other children were developing and that made me worry a little bit. So why can’t I do this? They can do it. In a way, in the beginning, I really wanted to be fixed. I wanted to be like the other children and I really wanted to have a life. It wasn’t until my early to mid adolescence that I had had enough. I wanted to take time off therapy at home and focus on other things in my life. My parents couldn’t understand why. I thought I’m 15 and I want to learn how to cross the street. What is laundry, and how do you do it? I want to use the microwave. It’s important not to get stuck on one developmental step like walking. It’s important to look at the whole picture.

Crystal on self-esteem: Gaining a positive identity was more of a process. You don’t just wake up one day and have it. I always felt I was really ugly because I couldn’t sit up straight and I remember a physio pulled me in front of the mirror and made me point out all the things I see about myself. I pointed out everything CP-related: “My knee is bent, I can’t stand up straight, my knee is rotated, I don’t have any balance.” Then the physio pointed out all the things she saw, and they were all positive. “I see this 10-year-old girl who is always smiling, always positive and working hard despite the things she can or can’t do. You’re so cute. You’re wearing pink glasses and a red dress, and your pink shoes match your glasses.” There were certain triggers like that where I’d say “Oh, maybe I can look at myself differently.”

Crystal on social vs. medical advances: We need to advance in the medical field, but we need to advance in how we see things, how we think about things and the way we treat people. What are our values? Where do they come from? Why do we think the way we do? I can take the alphabet, and make it into words, and take the words and put them into sentences, and the sentences into paragraphs and the paragraphs into pages. Good for me. What about people who will never be able to do that for different reasons? What happens to them? Why does society deem them as persons of less value? Everyone has rights, no matter what their capacity. But the way the system is set up, if the person can't advocate for themselves, they don't have access to their rights. It’s not a question of medicine. It’s a question of what we value.

Tuesday, May 22, 2012

Rick Guidotti spent years surrounded by conventional beauty ideals. He worked as a fashion photographer, shooting all over the world for companies like L’Oreal, Revlon and Yves Saint Laurent. But one day, his outlook changed. He spotted a girl with albinism on the street and was struck by her beauty. When he researched the genetic syndrome in medical textbooks, he was put off by the dehumanizing images he saw. So in 1997 he started Positive Exposure, an arts organization that works with individuals living with genetic difference. Now, he works full time photographing and advocating for children with genetic syndromes.

BLOOM: How are the visual stories you tell about these children different?

Rick Guidotti: The images…that I was force-fed when I first started Positive Exposure were images that are typically used in medical textbooks: pictures of kids up against walls in doctors’ offices with a black bar across their eyes, pretty much being portrayed as a disease as opposed to a kid.

I understood the importance of these images to show health-care providers how a condition presents itself, but nobody ever looks like that! I thought, “There has to be another way that we can present the same information in a photographic image but add another quality.”

That quality we add is humanity.

BLOOM: How did you learn to see beauty differently?

Rick Guidotti: That’s something where I don’t fully understand what happened. Walking down Park Avenue I saw a kid waiting for a bus and she was beautiful. She had albinism, so was never included in (the) beauty standard. I realized instantly that there was so much more beauty out there. What terrified me was I wondered how many months I’d walked past that girl and didn’t see her.

BLOOM: Had you worked with people with physical differences before Positive Exposure?

Rick Guidotti: No! As a fashion photographer, not at all. I never even knew anybody with a genetic syndrome in my life!

BLOOM: How can Positive Exposure’s images help to fight our fixations with beauty ideals?

Rick Guidotti: By giving people permission to see beauty and to interpret beauty in their own right. Not to see a beauty that’s dictated by industry’s ideas of what’s acceptable, but to judge for yourself. This is not inner beauty. I don’t believe in that. I’m as shallow as it gets. These kids are gorgeous, we’re just not allowed to see it. But these images give us the freedom to see it and it changes everything.

BLOOM: Have you noticed a difference in kids after they see their photos?

Rick Guidotti: Oh my, across the board! I first started off with a girl named Christina with albinism who had been teased her whole life for her difference. Even though she was stunning, gorgeous, she walked in with her shoulders hunched, her head down, no eye contact. She had zero self-esteem. But then photographing her and showing her her magnificence, like “Look at yourself!” I watched her just transform in front of the lens. And it happens every time.

BLOOM: Why is it important for people to see these images?

Rick Guidotti: I can shoot photos of a kid in my studio and they can see they are amazing. But by the time they leave the studio and make their way down Park Avenue, five people stare at their wheelchair or their birthmark, or somebody whispers or giggles or points or looks away. Their empowerment breaks down immediately. We realized that what we need to create are opportunities to make the idea of celebrating (diversity) relevant to the public at large.

It’s so important to bring these images to the public in many different ways, so that people have opportunities to really approach them. Because once you approach these images, you’re no longer afraid to look at them. You reach out, not because somebody has a difference, but for humanity, to a person. The fear is broken down.

Interview by Megan Jones. Full story in the July issue of BLOOM. Rick calls the photo above: The Amazing Pauline!

Monday, May 21, 2012

Friday, May 18, 2012

I have a wonderful Ryerson journalism student working on BLOOM this summer. Her name is Megan Jones. Here's a piece she did on the benefits of video games for children with cerebral palsy. The image left shows a child's skeleton while playing Wii tennis, as captured by a motion tracking system. This allows scientists to calculate to what extent the wrist, elbow and shoulder were used during the game.

Hey kids -- get mom to read this!By Megan Jones

Active video games like Wii Fit may have physical benefits that play a role in rehab for kids with cerebral palsy, according to a study published online in the Archives of Physical Medicine and Rehabilitation.

Seventeen children participated in the pilot study, and were observed as they played four games: Wii Bowling, Wii Tennis, Wii Boxing and Dance Dance Revolution. During play, researchers monitored and documented the kids’ motion, energy and level of muscular activity. After playing the games, participants filled out a survey about their level of enjoyment.

Researchers used this data to evaluate the potential therapeutic benefits of the video games. They found that while the games couldn’t replace more vigorous or formal exercise, they were effective in providing enjoyable therapy focused on specific joints and movements.

In children with one-sided weakness for example, Wii Fit acted as a fun way to exercise and strengthen weaker limbs. The games also relied heavily on fast wrist movements. Many children with cerebral palsy have difficulty extending their wrists, and continuous, quick, wrist muscle use could help to improve this.

Elaine Biddiss, a scientist at Holland Bloorview and the study’s lead investigator, says it's worth looking at the role of technology in rehab because it can help to engage children. She believes video games in particular can improve kids’ participation.

“Video games incorporate a lot of the characteristics we would like to see in physical therapy and motor- learning programs,” Elaine says.

“Kids are rewarded with points, there’s feedback provided so they see how well they’re doing in the games, and you can change the level of difficulty.”

Most importantly, Elaine says, children have fun.

“It’s something that kids would be willing to do in the home, whereas practising traditional exercises might be laborious,” she explains.

Although the study’s findings were promising, Elaine says that using the Wii system did present the team with challenges.

Some children found ways to “cheat,” as the sensor in the Wii remote couldn’t tell the difference between a small wrist flick and a full arm movement. Kids sometimes made smaller movements, using less physical effort, but still achieved success in the games.

As a result, Elaine recommends that parents monitor their children’s play. She also suggests they encourage kids to put the same degree of movement into the virtual games as they would in real-life sports.

Finally, parents should discuss the way their child is using the system with therapists to ensure that the games are being played therapeutically.

Elaine says she and her current team see the pilot study as a starting point, and she hopes that further research and technological development will lead to more effective gaming systems.

“The Wii is not the tool that’s going to provide the best quality therapy,” she says. “But based on the success of this study, we’re working on developing better games and systems that are targeted towards therapy.”

The team is looking into the use of camera-based systems, which would be harder to cheat with. They're also hoping to design games which would allow therapists to tailor goals for individual children.

“We’re still a ways away, but we’re hoping that these games will maximize the potential of low-cost technology that can be used in the home,” Elaine says.

It began when Rick started photographing children with albinism, who had been shunned and teased because of their different appearance.

It grew into a project called Positive Exposure, which focuses on children and adults living with genetic conditions. Rick does photo shoots at annual support group conferences for children and adults affected by genetic conditions.

"Each individual living with a genetic difference desires to be viewed first and foremost as a human being," is his message.

I love this!

The organization also goes into public schools to educate students about our common humanity: The Pearls Project.

Monday, May 7, 2012

In its December series, The Los Angeles Times found that for autistic children ages 3 to 6 — a critical period for treating the disorder — the Developmental Services department spent an average of $11,723 per child on whites in 2010, compared with $11,063 on Asians, $7,634 on Latinos and $6,593 on blacks.

What is the most important message this autism self-advocate wants his audience to take away from No pity? “[This is] a disabled teenager’s heartfelt appeal for respect and dignity,” says Drew. “Dignity always trumps pity.”

Last week when Ben walked into the Kumon waiting room with a volunteer she was all smiles.

“Flawless!” she exlaimed, holding up a book of sums adding 4 that Ben had just finished.

Ben and I grinned and I could imagine his chest filling with pride.

Every child needs to feel successful and I’m grateful that Ben is having this opportunity – even if it’s totally out of whack with the typical learning trajectory of kids.

At the same time, I remind myself that less than a year ago Ben couldn’t even write – much less sit focused and add numbers.

I’m doing a presentation for some medical and research students and I keep coming back to how my conceptions of disability (intellectual and physical) before having my son were wrong. WRONG. WRONG. WRONG. So far off the mark.

And how conventional ways of measuring success can never come close to capturing the complexity, richness and essence of a human being.

Right now Ben is enamored with the Mr. Men series of 49 children’s books. You know – Mr. Greedy, Mr. Brave, Mr. Daydream, Mr. Dizzy, Mr. Bump.

I remember these books as a child. Apparently they were created by British author/illustrator Roger Hargreaves after his son Adam asked: “What does a tickle look like?”

Ben doesn’t want me to read these books with him. He wants to enjoy them himself. There's something about the characters and how their names match their appearance and personalities that Ben finds humorous. Being so petite himself, perhaps he's also drawn to the little square format of the books and the little characters. Who knows, maybe he sees himself as Mr. Ben.

Back to my presentation. We don’t need to make disabled kids ‘normal.’ We need to open people’s minds to see youth with disabilities as full human beings with their own rich worlds.

Wednesday, May 2, 2012

In Flippity flop I wrote about how people make split-second judgments about children who have facial features associated with genetic syndromes.

A French study published last month in the journal PLoS One finds that photos of children with Down syndrome elicit less positive attitudes than photos of typically developing children -- particularly if the features are 'strongly typical' of the syndrome.

In addition to asking 165 adults to openly rate photos, the researchers gave participants implicit-association tests, which capture the strength with which certain groups of people are automatically, without conscious awareness, associated with positive or negative attributes.

They found positive explicit evaluations of children with Down syndrome can co-exist with negative associations at an unconscious level, revealing hidden stereotypes.

Given their findings, the researchers say we need to go beyond testing stated attitudes to estimate the true extent of stigmatization of children with Down syndrome.

The group of 165 participants included 55 young adult students, 55 non-student adults and 55 professional caregivers who work with people with intellectual disabilities. In each group of participants -- including that of the caregivers -- photos of children with Down syndrome were automatically associated with a negative trait.

However, while the groups of adult students and non-students were more likely to rate photos of children with strong Down syndrome facial features less positively than those with less distinct features, this stereotyping within the category of Down syndrome was not seen in professional caregivers. "This is consistent with the idea that relationships with intellectually disabled persons promote positive attitudes toward them," the researchers say.

Thank you to Amy Julia Becker for sharing the photo above of daughter Penny, who has Down syndrome, and her brother William. Amy is part of our BLOOM speaker series May 10.

"One thing that left me speechless was that the majority of the children’s companions there were mothers who were alone because either their husbands were at work or had abandoned them and their disabled children," Doce writes.

The Children's Aid Society of Peel has petitioned to have a baby removed from the home of a couple who have cerebral palsy, unless the couple hires a full-time, and in their words, "able-bodied" attendant.

Metro Morning's Matt Galloway spoke with Ryan Machete, who works with the Coalition for Persons with Disabilities in Unfit parents.

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